Idelalisib & 17p deletion

[spud2212]

Is anybody else on my "whacky" journey with this most difficult prognosis.. It'd be good to share experiences and thoughts... Positivity all the way!

[specsx4]

My husband is 17p and 11q deleted. Neck nodes enlarging recently. Still not commenced treatment.

[Hidden in reply to specsx4]

17p and 11q deleted. Those are tough odds. Best of luck on his journey.

[spud2212 in reply to specsx4]

do you know what treatment is being lined up for him?

[spud2212 in reply to specsx4]

Do you know what treatment your consultant has in line for him?

[Hoffy in reply to specsx4]

I am 53 and have 17P Del and Trisomy 12. I have been on Watch and wait for almost a year but Lymp nodes are getting bigger. Taking high does of green tea supplments. There will be a Imbruvica + Venoclax Clinical trail starting in Late Dec that I might do. It will be at 20 cites. I will probably do this. It should be a great Combo Therapy!

[PE1234]

Hi spud2212

Like you I am 17 p but am on Ibrutinib .

I have been on Ibrutinib since May of last year .

My consultant is happy with how things are going .I will see him again inOctober

How do you find Idelalisib ?

The Ibrutinib is working well for me .

Can't say I never get any side effects because that wouldn't be true .I seem to lose one side effect and then go on to another for a few days .

Some days though a feel really good and think that they must have been mistaken and I don't have Cll at all .

B😉😉😎

[spud2212 in reply to PE1234]

Idelalisib is working well.. my blood counts are near normal with no side effects at all.. My consultant has raised the idea of a mini stem cell transplant which I'm considering now.

[Fant1924]

Have both 17p- and tp53 mutation. Ibrutinib since Oct 15 and continuing to see gradual improvement in WBC, Hg, and platelets. Hardly any side effects. From what I read Idelalisib is not quiet as gentle. Slow but steady wins the race.

--Dennis, Auburn, AL

[spud2212 in reply to Fant1924]

Fortunately for myself I have no side effects apart from the odd small rash. Glad to hear all is working well for you too!

[Nanno75]

I am in my 3rd year since diagnosis and still watch and wait. My fish test indicated that i am 17p deleated.My bloods are taken

every 3 months and my wbc was 21 in the beginning and is now 31.my alc was 18 and is now 28.

I suffer from the usual fatigue and an occasional swollen node, but the nodes seem to subside quickly. I rarely get night sweats, but do get a drenching sweat in the day several times weekly. I think i am still at stage 0, bit may have moved to stage 1. No treatment thus far. I make it a point to get at least 8 hours of sleep at night and rest during the day .

From what i have learned on this site, i am happy to put off tx as long as possible. In my recent reading i have discovered that cll folks with our deletion are called 'high risk'. So far i have grown used to having CLL and only wish more folks had an understanding of this type of leukemia...keep on keeping on and best wishes Spud.

I live in the US, not far from Mayo and the U of Minnesota, and would gladly participate in a trial if I could meet the requirements. Nano

[spud2212 in reply to Nanno75]

Have you not been directed to by your consultant to what medication would benefit you?

[Nanno75]

My hematologist/oncologist states that i will not require tx at all until i reach stage 4...Nancy

[spud2212 in reply to Nanno75]

That sounds fantastic